Posts tagged with hunter-syndrome

Newborn Screening for MPS

Posted Wednesday August 24, 2011 by Melissa

Yesterday, the governor of Illinois signed the groundbreaking bill that requires newborn...

Yesterday, the governor of Illinois signed the groundbreaking bill that requires newborn screening for MPS II (Hunter Syndrome) and MPS I (Hurler, Hurler-Scheie or Scheie Syndrome) within an infant’s first...

Read More »
Case in NICU

Therapy Thursday: Puzzles

Posted Thursday July 21, 2011 by Melissa

Puzzles have long been a favorite child activity, but I never understood...

Puzzles have long been a favorite child activity, but I never understood the magnitude of their educational value until now. As Case’s cognitive abilities continue to improve, I am on...

Read More »

Milestones

Posted Wednesday July 20, 2011 by Melissa

Milestones are things we hear about before our babies are ever born....

Milestones are things we hear about before our babies are ever born. There are pregnancy milestones that then become first year milestones, and second, and on and on. For many...

Read More »
IT dose 8

An MPS Cardiology Visit

Posted Wednesday June 22, 2011 by Melissa

Children with MPS often suffer from cardiac manifestations of the disease. The...

Children with MPS often suffer from cardiac manifestations of the disease. The GAG builds up in the heart itself and the valves, causing leakage or “regurgitation” and may enlarge the...

Read More »
Echocardiogram

MPS II Intrathecal Trial on Hold

Posted Wednesday June 15, 2011 by Melissa

UPDATE: As of 7/1/11, the suspension on enrollment in the intrathecal trial...

UPDATE: As of 7/1/11, the suspension on enrollment in the intrathecal trial was lifted by the UNC Institutional Review Board. ———————————————– A clinical trial is never a place to get...

Read More »
Taking Time

Therapy Thursday: Weighted Garments and Blankets

Posted Thursday May 26, 2011 by Melissa

In keeping with a prior post about making weighted toys, I thought...

In keeping with a prior post about making weighted toys, I thought we’d take the next step and discuss weighted garments and blankets. Sometimes these are also discussed along with...

Read More »
Case sleeping at the hospital with his blanket

Be Still My Beating Heart

Posted Friday April 29, 2011 by Melissa

(Humming to Sting as I type this) I really did have to...

(Humming to Sting as I type this) I really did have to still my heart when I heard the latest news. So as not to steal the Thomas family’s thunder,...

Read More »
Heart anatomy

Games and Puzzles

Posted Wednesday April 27, 2011 by Melissa

Not too many parents are excited when their child is enamored by...

Not too many parents are excited when their child is enamored by a video game, but I was jumping for joy today. I wasn’t sure what to expect when Case...

Read More »
Case playing video game

Therapy Thursday: Making Weighted Toys

Posted Thursday April 21, 2011 by Melissa

Many of our kids have issues with proprioception, a word I had...

Many of our kids have issues with proprioception, a word I had never heard of until about a year ago. I never understood why Case liked to push furniture around....

Read More »
Cozy Coupe

Top 10 Tuesday: Top 10 Signs Your Son is in a Clinical Trial

Posted Tuesday April 19, 2011 by Melissa

Welcome to our first Top Ten Tuesday! On a side note, if...

Welcome to our first Top Ten Tuesday! On a side note, if you have any submissions or ideas to use as future Top 10 Lists, feel free to submit them...

Read More »
Top 10